Shari’s Story: Living With Autoimmune Disease

It is 7 PM on a Thursday, and I am seated across Shari, a 46 years old woman with shockingly red curly hair. This is her story.

Shari grew up in the middle-class Chicago suburb of Downers Grove. She showed exceptional creative talents at an early age and would entertain her parents with her complex stories about bunnies. There was something different about Shari, an old soul with an inquisitive mind.

Early intelligence testing gave a partial answer. Shari was a genius. Coming from a family of achievers, she was right at home. Shari was in the top two percent of her high school class, a fact even more amazing as she was involved in over 20 clubs/activities while she worked a part-time job. Despite her accomplishments, Shari always found the most peace in simple things. She deliberately choose the smallest bedroom at her parent’s home and shunned excessive possessions.

College was expected, and she applied and was accepted to the University of Illinois, a premier university. Always a storyteller, she decided on a rhetoric major. As a concession to her father’s fears of unemployability she also took courses in accounting. As in high school, Shari excelled at the U of I. She overloaded herself with classes, worked different jobs, and even became a resident advisor for her dorm. “I took six years of classes in 4 years,” she told me. Her academic achievements at the U of I were significant enough for her to be named a Bronze Scholar, one of the university’s highest undergraduate honors.

Despite her success, something was not quite right. Late in her college career, she became ill to the point of requiring hospitalization. Despite her academic success she felt stressed, instead of accomplished. “I raced to the top of the mountain, and there was nothing there.”

More studies followed at the University College of Cork in Ireland where she obtained a certificate in Irish Studies. Then it was time to get a real job.

What jobs are available for rhetoric majors? Not many, and so she accepted a two-day temporary position at Ace Hardware corporate doing routine data entry. When you are smart, you can generalize what you know and see the bigger picture. In Shari’s case, she was able to use her accounting knowledge to see errors in the data that she was inputting into the computer. She told her supervisor what she observed and went from a two-day temp worker to a full-time position on her first day. Shari was entering the corporate world.

One task led to another, and soon she was designing complex databases and doing statistical analyses for Ace. At the same time, a romance was forming in her life. She met her first husband when she lived in Ireland. He traveled to the US so they could check out the viability of their connection. When his visa ran out, she quickly decided to marry him.

Unfortunately, the relationship was doomed. Her husband couldn’t hold down a job, and would impulsively spend money. She would react by working harder to pay down their debt. Shari learned more programming languages, and soon was working on mainframe computers. A lucrative but time demanding job in pre Y2K.

Wanting to do the right thing it wasn’t uncommon for her to work late in the night and then bring home additional work. The stress of unnecessary debt, extraordinarily long working hours and a difference in values eventually took its toll, and her marriage ended. Raised in a strict Roman Catholic household, the divorce was devastating to her.

More jobs, more responsibility, more challenges. Shari was being pulled by two forces that were equal, but opposite in direction. A desire to have a simple life, and a wish to do an outstanding job in the corporate world.

Along the way, she met her second husband. He was resentful that Shari had a circle of friends and convinced her to move so they could start anew and be on an equal playing field. Where did they move? They moved from Chicago to Australia. In Australia Shari did what she does best, learn. She finished a Master’s degree in creative writing at the prestigious University of Sydney and then went to work at the university. Shari told me that she loved living in Australia, as everything she needed was within an easy walk. A simple life was what made her happy.

She traveled to India on holiday and became ill. She returned to Australia sick and very weak. She found herself working from home, as she did not have the energy to get dressed and travel to work. This went on for many weeks. Slowly, and with the help of medical professionals, she recovered. However, something had changed, something was wrong. Also, her second marriage was now failing, and another divorce was on the horizon. The prospect of a second divorce was sobering.

Shari continued to work at the University of Sidney, and her brilliance promoted her. She was given important projects and a team to work under her. One of her hires was a man named Jason. A person who barely said two words to her while they worked together. But more on Jason later.

With a broken second marriage, she decided to leave her life in Australia and return to the United States. She left behind true friends and the basic life that she loved.

Now back in the US she once again got jobs in business and IT. Learning new systems quickly, always seeing the bigger picture, always overworking. After 18 months she returned to Australia to visit friends and co-workers. Her former employee Jason was at one of her welcoming dinners. “He seemed different, more talkative and engaged.” By the end of the evening, they were holding hands. Four years later they married.

Finally, it seemed like things were going her way. She was married to the love of her life, she had a small and manageable home in Downers Grove, and she had a good job.

Stress was working overtime in the background as she continued to overwork. In the first year of her marriage, she was hospitalized with a bout of Ulcerative Colitis. She developed chronic anemia. In 2012 she was hit by a severe, unknown malady that left her twitching, and uncoordinated. She couldn’t think straight and had no short-term memory. She was in constant pain, and she was continually sleeping. She went from being able to see the bigger picture to not knowing if she let her dog out. It was a horrible time for Shari.

She sought medical attention and diagnoses were made. Autoimmune thyroid disease, autoimmune neuropathy. She started to do her own research and determined that one of her problems was Hashimoto’s Encephalopathy (HE), a diagnosis later confirmed by her physicians. HE is an autoimmune disorder that causes an inflammation of the brain and produces neurological symptoms because of that inflammation. Other related problems emerged, Lyme Disease, Possibly PANDAS (another autoimmune disease caused by a Streptococcus infection). The combination of stress and infectious agents were creating a one, two punch that was making her life unmanageable. Her body was literally destroying itself.

Shari fought back. Using her own research, novel treatments, and an expert medical team, a multi-modal treatment emerged. Thyroid replacement hormone, steroids, neuro-cognitive training. These have all helped improve Shari’s functioning. However, her health is still fragile. She takes one step forward, only to slide backward with the slightest stress.

Shari is a giving person, but she can become over-involved helping others. She willingly helps friends and family, but her actions can result in an exacerbation of her autoimmune illnesses making her non-functional for days. She would like to be a financial contributor in her marriage, but even part-time work can be too stressful. She struggles with her current lack of functioning, her poor memory, her fatigue.

She says that many doctors missed her diagnoses; they only reviewed simple lab panels and didn’t delve further. She wants to advocate for others who are dealing with undiagnosed maladies. At this time she is a health coach for a young woman who suffers from another chronic disease, but Shari wonders what her next step should be. She knows that it can’t be fueled by the obsessive drive that gave her success but contributed to her sickness. Her illness has forced her to re-explore what has consistently made her happy in the past, a simple, basic life.

Despite her illness, she is grateful. Grateful for the beauty and majesty of nature, grateful for her caring friends, grateful for her loving family, and most of all grateful for her soulmate, Jason.

Life is what you make of it. Sometimes it is more important to celebrate what you have than to constantly grieve over what you have lost. Rejoice in today as will never be repeated.

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One thought on “Shari’s Story: Living With Autoimmune Disease”

People are their own best advocate for their health. Never accept a vague diagnosis or a doctor’s lack of understanding of your specific symptoms. Do your own research and keep doing it until you find answers. Don’t stay with doctors who are not helping you or making you feel less than you know yourself to be.